How Changing Reproductive Health Laws Could Impact Perinatal Hospice

Evolutions in reproductive health laws may have reverberating impacts on the demand and delivery of perinatal hospice care.

Perinatal hospice care is provided to families choosing to continue a pregnancy following a life-limiting prenatal diagnosis indicating a high risk of mortality before or shortly after birth. This care includes emotional, spiritual and medical support to families navigating the complexities of a terminal illness. Perinatal hospice providers work closely with health care professionals in neonatal intensive care units (NICU) and reproductive health settings.

The changes taking place around reproductive health laws have contributed to mounting concerns about the future outlook for perinatal hospice services and how those professionals collaborate with others in the care continuum to reach families in need, according to Emily Cane, manager of clinical programs at Torrie Fields & Associates (TFA), a value-based health care consulting company. Cane is also a registered nurse with a background in neonatal care and reproductive health legislation research.

Laws impacting the reproductive health landscape could affect perinatal hospice utilization in a number of complex ways, from increasing disparities in access to rising demand for care, Cane indicated.

“It has been very eye opening to me to see how the laws vary by state and how much that impacts the care I was able to deliver to patients,” Cane told Hospice News. “I started seeing how inequitable care is being delivered, specifically to those in the NICU. Some of the most restrictive abortion laws following the overturning of Roe v. Wade have had impacts on social determinants of health and access to certain reproductive services. These restrictive reproductive laws will certainly increase the demand for perinatal hospice services with a lot more families needing to seek alternative methods when facing a life-limiting fetal diagnosis.”

Laws in flux

The U.S. Supreme Court in June 2022 overturned the Roe v. Wade decision, which since 1973 had established a legal right to abortion. The 1973 ruling stipulated that a person may choose to have an abortion up until about 24 to 28 weeks of pregnancy. 

Since then, several states have enacted legislation pertaining to reproductive health. As of Jan. 8, an estimated 21 states have passed abortion bans or other restrictive policies related to reproductive health, according to the most recent data available from The New York Times tracker.

“It’ll be extremely important for legislation to be able to cover perinatal hospice services at all levels of needing this care,” Cane said. “It’ll become difficult to cross a very ethical line at a certain point in these restrictive abortion states with requirements mandating counseling when a patient is searching for alternative methods of care. It’s going across a sticky line in utilization.”

It has been very eye opening to me to see how the laws vary by state and how much that impacts the care I was able to deliver to patients … It’ll be extremely important for legislation to be able to cover perinatal hospice services at all levels of needing this care.

— Emily Cane, manager of clinical programs, Torrie Fields & Associates (TFA)

Evolving reproductive laws also can also affect the types of emotional, spiritual or grief care a family needs, according to Catherine Nichols, pediatric nurse practitioner at the Community PedsCare program. The program launched in 2000 by Florida-based Community Hospice & Palliative Care, an affiliate of Alivia Care Inc. They can also have financial implications.

For instance, Florida state laws stipulate that the family becomes responsible for the financial costs around fetal remains following 20 weeks of pregnancy, including burial and funeral services.

These costs can be compounded by medical expenses, which can further complicate bereavement processes, Nichols said. Families often need perinatal hospice providers that can connect them with financial, practical, emotional and grief support resources, according to Nichols.

“We have referrals to a program called Angels for Allison that really comes in and helps families with these life-limiting diagnoses,” Nichols told Hospice News. “We also have financial support in our program that doesn’t bill our families’ insurance. A loss is a loss, no matter how you look at it. And that interdisciplinary hospice team is there to help through that grief and loss. These are people who receive more visits at the end of life and after, because they’re at higher risk for postpartum depression. So it’s providing funeral and financial assistance [and] the emotional and coping and bereavement support not just to the [parent], but others in the family.”

A growing need

Care coordination with neonatologists, obstetricians and other pediatric specialists is a key part of providing quality perinatal hospice services, Nichols said. Providers in these settings are often referral sources for perinatal hospices and an important part of the access equation, she explained.

The ability to coordinate medical needs alongside goals of care requires an understanding of local reproductive health laws, according to Cheryl Mele, advanced practice neonatal and pediatric nurse practitioner for the Community PedsCare program. Understanding these laws can help providers ensure goal-concordant care and coordinated services, as well as help strengthen referral relationships, she indicated.

Looking ahead, perinatal hospice services could see demand rise along with a greater need for collaborative care, Mele stated.

“There’s a need nationally for perinatal hospice to grow, no matter what the laws are,” Mele told Hospice News. “I see a value in the program especially in NICU and hospital-based palliative perinatal settings to help with seamless introductions to other services and support we can give families. We can help them in different scenarios and support their journeys alongside neonatology and other disciplines. Even if the [pregnancy] ends in utero, it still has meaning for that family, and they still want to honor the memories.”

There’s a need nationally for perinatal hospice to grow, no matter what the laws are. I see a value in the program especially in NICU and hospital-based palliative perinatal settings to help with seamless introductions to other services and support we can give families.

— Cheryl Mele, advanced practice neonatal and pediatric nurse practitioner, the Community PedsCare program